I am Patrick and I have advanced multiple sclerosis

I have advanced multiple sclerosis

I am Patrick and I have advanced multiple sclerosis; A physically active life is no longer possible, balance and walking problems get in the way. Also I am not allowed to drive because of double vision, another kind gift from multiple sclerosis (MS).

The beginning

I am convinced my multiple sclerosis started in 1972, my bladder misbehaved. I was 18 at the time, I didn’t think about it again.  In 1979 I had a major bladder disaster, I blamed the pressure of work and fatigue as the reason for the problem. I had another relapse a few days later then the problem went away. Tiny relapses with my bladder happened sporadically over the next 15 years but being a bloke I ignored them.

Diagnosis

In 1994 I visited my doctor because I had double vision. Several months later I was diagnosed with relapsing remitting multiple sclerosis. I had no idea what this meant and in those days there was almost no help for people who had been diagnosed and the internet did not exist. The double vision only affected me when I was physically exhausted. Another issue, the grass was a different shade of green depending which eye I looked through.

At this stage there were no drugs to reduce progression, that boat docked several years later.

Secondary Progressive

After diagnosis MS lived at the back of the wardrobe but it was a subject I joked about at dinner parties. In about 2000 I began to notice little irreversible changes in my body, for example when walking over rough ground my left leg started to drag . By now I had secondary progressive multiple sclerosis.  Since 1999 the MS has slowly changed me from someone who was reasonably fit, I could do a 16 mile dog walk, into someone who cannot walk unaided.

Advanced multiple sclerosis

From the waist up I appear to be a perfectly healthy person. I now have serious foot drop in the left leg and I am dependent upon walking aides. Initially I used a MuSmate to stop my foot dragging along the pavement. In 2014 that was promoted to a Functional Electrical Stimulator (FES). My bladder is the big hidden disability, I have to do Intermittent Self Catheterisation (ISC). Just recently I received Botox and that was a huge elephant kicked out of the room. These days I have to use a mobility scooter, its called a Travelscoot or The Trike. A rollator is essential to walk around the house and garden. I also have far too many hidden disabilities and I would like them to stay in the locker. I reckon I have advanced multiple sclerosis, no drugs to reduce progression but life could be a lot worse

Drug Trials

SPMS is progressing slowly but inexorably. I had to stop work as a freelance computer consultant in January 2012.

I have been on two drug trials. The ASCEND trial 2012 to 2014 testing Tysabri on people with SPMS to find out if it slows progression.  The results were inconclusive and the trial was canned.

I participated in the MS SMART starting in December 2015 for two years but the results were not positive.

In June 2019 I started the MS Stat2 drugs trial to enhance protection of the brain. It will test if simvastatin can slow disability progression over a three-year period

Treatment is getting better for RRMS but so far there is nothing licenced for SPMS :-(. I am lucky to receive Fampradine, it rolls back MS by a couple of years.

Associated articles

I am Patrick and I have advanced multiple sclerosisTravelscoot

 

 

 

 

 

I am Patrick and I have advanced multiple sclerosisLetter to Multiple Sclerosis

 

 

 

 

 

July 2020

2 responses to “I am Patrick and I have advanced multiple sclerosis”

  1. Elizabeth says:

    Patrick, As a ‘fellow, well-meaning MSer,
    1. Thanks for sharing your story, especially as a man with MS…, I’ll follow your story, although my own is different obviously.

    I am a m50 year old woman, who was apparently disgnosed with MS in August 1988!

    Ido not remember being diagnosed with RR MS…, I wander what my medical records say. I was keen to move to London, rather than return to Northampton having completed my University studied( economics BA Nottingham University…. Insteas I moved into a room in a shared house in Brixton….

    In terms of MS ‘symptomsI still remember reporting an unusual visual presentation to my parents’ GP, but this would have been a very long time ago: 1978 Mayr

    My helpful, Ihope question now Patrick is, what, if anything can I do from here on in?…Though fairly well qualified, I am NOT a confident ‘people’ person….

    • Hello Elizabeth,

      Like you I too was diagnosed a long time ago and it didn’t really affect me until about 2005. I think the most important thing is to make people understand how MS affects the mind and the body and the fact that it’s a progressive disease with no known cure.

      Nearly everyone knows or has known someone with the disease but really knows very very little about the impact of the disease and why it varies so much from person to person. So your mission is very simple, just make sure people know more about multiple sclerosis.

      Good luck

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